Hi Helen.

It’s my Dex night/morning too my nap is over and I’m awake again.

I know what mean about hoping that Pomalidomide lasts a long time because I too know the the next drugs will be harder to tolerate. Bendamustine which is predicted to be my next treatment has a very mixed press side effects wise so quality of life will take a hit. The…[Read more]

Morning Andy,

An attitude can be a really positive thing, It’s just difficult when you’re right and everyone else is wrong and they don’t know it 🙂
As for my exams, passed the first two and presently doing a practical in an old people’s home. I’m supposed to be doing care work but helping more with activities such as gentle exercise, crafts and…[Read more]

Thanks everyone.

Well cycle 21 is underway and I’m all Dexed up. Tablet 1 of my 21 Pomalidomide tablets has been washed down not with beer I hasten to add but water. I’ll raise a beer and wish good luck to cycle 21 on Friday. We’ve got a busy day Friday Steph and I we’re lunching with Ian and Maureen Sinclair, from this forum, and then Friday…[Read more]

Hi Liz.

It’s my Dex night so I sometimes come around here to check how everyone is getting on. I used to be around more often but I found the forum website a bit difficult and slow after it got “updated” though it’s behaving itself tonight.

How is Kev getting on? Did he have the second round of DTpace?

You mentioned Kev’s neutrophils being 0.6…[Read more]

Hi,

I’ve also read quite a lot of information about cancer loving refined sugar. I think you are absolutely correct to see whether reducing refined sugar from your diet can reduce your myeloma levels. I hope your myeloma continues to show improvement.

Have you had a chance to read the interesting discussion on the forum section of the…[Read more]

Hi Mike, sorry to hear that Thalidomide stopped working and hope VCD working for you.  The steroids do cause so many problems.  Hoping next blood results are positive for you.
You have been an inspiration and your helpful, informative posts gave me, and I suspect many others, invaluable support at a time when I felt overwhelmed by the enormity o…[Read more]

Hi Lolly

The combination of drugs is certainly working for Steve. I suspect his cold sensations and voice changes are all part of the many side effects which we can experience from the cocktail of cancer drugs in our bodies. Because maintenance drugs are not yet approval as regular treatment for myeloma in the UK, perhaps if you read through some…[Read more]

Hi Mervyn

You sound like you are coping well with the treatment. I wouldn’t worry too much about your appetite, because eventually it will return once your body recovers. I couldn’t eat any food for ten days whilst in hospital following my SCT due to constant nausea and sickness even with three different types of anti-sickness drugs. I slept…[Read more]

Hi Helen

Good news about your son completing his final recital for his degree. I hope he manages to achieve a good result and find work which he both enjoys as well as pays his bills. Will he be staying with you at home? You will certainly have your hands full trying to scale down your belongings and items before you move into a smaller…[Read more]

Hi Val,

As you say, it’s far better the medics found Peter’s myeloma readings before his SCT. He is in the right place to receive more chemo and to be carefully monitored in hospital throughout the process. Dealing with the ups and downs of such news is so stressful and worrying for both of you. As Maureen suggests, please see whether you can…[Read more]

Good news Andy, Does it have anything to do with attitude? Enjoy the rest of the summer.

Richard

Hi Lolly

So pleased to read Steve is still in remission and long may this continue. What drugs is he currently taking as part of the trial? What parts of his body does he feel cold? Does he get the feeling during the warm or cold weather, or throughout the year?

Although the readings for my body temperature are quite normal, I feel my…[Read more]

Hi lej13, sorry to read that your dad is having problems with his treatment. I am on velcade, dexamethasone and thalidomide, I wonder if the pins and needles could be neuropathy, in which case you do need to talk to the consultant and have the dosage changed or the drugs changed for something which dad finds more acceptable. First thing Monday I…[Read more]

Hi Andy

That’s great news and such a relief for you. Long may the medication continue to keep your myeloma in remission.

Jan x

Hi, yes seems a permanent problem. Not really a hoarse voice more strained, still odd.
Had an appointment with consultant today, she feels that the voice problem is the Dex! discussed feeling wiped out, not the drugs, seems that I have an infection, so have 5 days of antibiotics.
Regards
Tony F

I’m on velcade, dex and thalidomide, two weeks on, one week off, and I have the same voice probs. This is my week off drugs and I am absolutely wiped out.
Reckon dex has a lot to answer for!
Regards
Tony F

I think that you should be receiving a copy of the consultants letter as a matter of course. Mine normally take about 12/14 days after appointment to arrive, always have done.
Don’t be paranoid, you’ve got enough to worry about!
Hope you can sort it out.
Regards
Tony F

Hi Vicki &Colin.

Congratulations to you both. I hope you both had a fantastic day.

Wishing you plenty more days together that are filled love and joy.

Every day is a gift.

Lots of love to you both Andy xx